Pancakes.

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A year ago today, I spent most of my 40th birthday in bed, except for when I ate pancakes, twice. I really love pancakes. I probably should just write about pancakes, right? Well, here is my update on pancakes: I eat them every week. Sometimes for dinner. What? Yes. Sometimes I make a sandwich but instead of bread, I use pancakes.

So, ugh, by March of 2015, I had been slipping back to a place that was physically and mentally inconvenient. And I kept slipping. Stress at work and stress in my personal life weren’t helping. My Hashimoto’s symptoms were back, my thyroid levels were in my boots, and I was almost too tired to care. The sharp pain in my legs woke me up most nights, an all over stiffness slowed me by the end of each day, and my skin hurt. It what? Ya, it hurt. My life felt heavy and dark and hopeless.

The most difficult part of 2015 was my parents seeing me in pain. My parents don’t live here and with infrequent visits, they hadn’t really seen the decline in my health. They were scared. Which made me afraid too. Like, when you go to a haunted house and you know it is just a bunch of high school kids dressed up like ghosts but someone starts screaming and you start screaming too? Yes, just exactly like that.

So in bed that day, filled with pancakes (which really are very important for good decision-making) I mustered up a little plan to try something new and keep trying until I found something that worked. That was all I had, but it was something. I couldn’t drop out of life any more than I already had. There were squirrels outside that I needed to look at. Dogs that needed compliments. Cats that needed to be forcefully pet.

I started by making an appointment with a Naturopath. I knew after my first visit that she and I had similar beliefs about how food and allergies affect autoimmune conditions. I promised myself to be devoted to the process even though I wasn’t very optimistic at the time. I also knew that for everything I know about food and health, I needed help and I wasn’t going to do this on my own.  I was surprised at how quickly things shifted. Simple changes. Slow changes. For the first few months I followed a gentle gut healing protocol.  My medication started to work (I take desiccated thyroid and see my endocrinologist regularly*). The pain in my legs was mostly gone. The absence of pain is a weird and floating feeling. I give it 4 thumbs up. Two of those thumbs are actually toes! Gross!

I took a break from drinking and learned a lot about how my body processes alcohol. Turns out, not great! I think I should have done this when I was 19, because I was never “good” at drinking. I promise you that I tried very hard to be good at drinking and apologize to the parties I ruined by insisting people arm wrestle me or for all of the one-handed push-ups I did in restaurants.

When I couldn’t eat or drink things that made me forget how I was feeling for a bit, I had to face those feelings. There were some tears in the late part of 2015 that I was unable to sooth with sauerkraut. I have always liked food that made me forget for a moment that I was uncomfortable in other ways. I would rather have a stomach ache and maybe some terrible toots than feel emotions. But hey, here I was with no cookies. And no toots. Weird.

I struggle with my thoughts. Long ago seeds of unworthiness that rooted in my heart, twisted around my legs, and took me down again and again in these 40 years.  Some days I can’t push them off. I talk more openly about this now, in that way that dragging things out makes one hug them and let them go, like a cat you know doesn’t want to be hugged but you do it anyway because you are bigger than them. I talk more openly about this because I think it surprises people that this is part of who I am and perhaps if I share it and they have similar feelings, they won’t feel as alone as I have sometimes. Maybe people are like, ew, stop sharing. Fair. That seems fair.

I try to spend time with people who see me, and I them, for who we are. I will take physical pain over the hurt of not being seen, or not being whole, in the eyes of someone I have in my life.  I am really trying harder to see people and bring some softness to my judgment of them as well. Some people will always be “butt sausages”, but I figure a lot of people are having a hard time just getting up, they have their own sadness, their own little voice that keeps them down, or some combination of things that takes them 15 minutes to order a coffee while I wait behind them with my brain melting down the front of my face. On good days, I see all these hearts, brains and bones, getting up and trying. I don’t feel so different anymore.

Since last summer things have been looking really good. I can stay up late and go for long walks and bike rides. I feel happy, which feels weird and nice and sexy. I laugh a lot more and a silliness that had been buried by fatigue has returned and wants to be a brat. Sorry in advance!

When I eat something I shouldn’t or “over do” life in some way, and a pain flare starts to build, I climb into bed, and wait it out. I am not too proud now to take something to help. My ND taught me about the cycle my chronic pain has and how to stop it with herbs and over the counter pain medication. I also learned that I can’t eat Cheetos, or as I was calling them, “party carrots”.  I stick to a few important diet things, no refined sugar, and low grains, lots of vegetables and fruit, plus daily gentle exercise. This is what has worked best for me in these 8 years of figuring it out. No miracles, no magic vitamins, really nothing extreme at all. Just time, patience, and a little plan. Each day I keep trying.

So this brings me to today, my 41st birthday. Thanks for reading my blog and sticking by me and sharing your own stories. It means a lot to me to know that you are out there too. Thanks to my parents, my extended family, and my beautiful friends, for being supportive and strong and hopeful. I love you. This is probably my best birthday ever and I can’t even have a stupid delicious cake. But I can have pancakes!!! YAAAAAAAAAAAAAAAAAAAAY.

* little joke for my peeps with an endocrinologist, I wait 6 months to get a 15 minute appointment, but it is covered by health insurance and she is brilliant so I am not complaining. Okay, I am complaining a wee bit.

 

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My Year Of Cool Fun

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Today, my hands are especially cold. I would very much like to put them on you and watch you scream and squirm under my vampire power. I took a break after the last post because I was sliding into memories that are intense for me to re-hash, and very boring for you to read. Mostly, I dated some sort of sociopath and he was just exactly the last thing I needed. Then, for laughs, I fell down a very poorly maintained flight of stairs and fractured my shoulder. My shoulder then froze from the trauma, so I couldn’t do any dance moves except a weird pelvic thrust, which completely ruined any party I went to. For me. Everyone else was intoxicated by me, and my rhythm. I made those parties better I guess.

I am not sure if I can accurately describe what it feels like to have a limb freeze. I give it two thumbs down. If you are a cat or a dog, use your whole paw, it is easier, and cuter. I am not a big believer in pain medication, but there were nights where I woke up screaming and crying, unable to turn myself, like a beautiful raven-haired turtle, and in those moments I really regretted not being heavily medicated. The freezing felt as though the inside of my arm was made of guitar strings, and the strings were breaking. My friend Kate told me there are no guitar strings in my arm. But I am still not sure. My friend Kate also told me that I was a good person, and was strong, which was incredibly kind of her to say while ignoring all of the crumbs on my shirt. And my friend Graham, who called me “Little Wing” and who was allowed into the protective imaginary bubble I had around me for hugs, for the only human contact I had for most of that time. A fun fact about a shoulder freezing is that one doesn’t know when it will unfreeze. So it adds a magical surprise element to life that is cool and even stumps some of the finest medical professionals, and that adds a thick layer of worry! More worry please!

A big part of managing autoimmune disease is resting, which is impossible when part of your body is turning into The Thing. Another part is getting daily gentle exercise, which you will need both arms for. So I did my best, but I started to back slide health wise. It was too much, to be injured, to be embarrassed and heart-broken. I felt pretty dumb for falling for such a huge jerk, and I felt very badly about falling down those stairs. As if either of those things were actually my fault, although I thought they both were, in those painful and lonesome nights.

At some point, learning life lessons gets real old, real quick, and I spent the better part of a year healing all sorts of bruises. With no extended health benefits it gets very exciting financially, to choose between getting treatment and other important things, is just so invigorating. I would describe this time as My Year of Terror, and I became very afraid, of everything, as there was little reprieve from physical and psychological pain.

I fought every day against giving up and building a fort out of pizza boxes (empty pizza boxes, do you think I am new?). When I finally started going out again, I only made eye contact with squirrels and very close friends. Thank you to all for your patience. Especially the squirrels because you guys are not great at being patient, so I have made you these hats out of walnut shells and I thank you. Seriously though, thank you friends for keeping me out of a tailspin. But hey, check out my tail. It would look very beautiful spinning. Weeooooooooooooooooo. But here is my apology for not coming to your parties, or anything later than 9pm at night. I just couldn’t do that and do my daily life, and have a robotic arm of sorts.

Largely, what I learned and I am still learning is how stress impacts me, and how I am growing more aware of it with the passing of time. Stress may impact you in a similar way. Have you found yourself standing for fifteen minutes staring at chips while clutching a bag of cookies, wondering what perfect combination of flavors will erase – at least for a moment a belly full of worry and a brain full of fear? The answer is the gluten-free fudgeos things, and the plain ruffled chips. And a bottle of Perrier- because pop is for children. It isn’t! I am kidding. Pop is the most delicious thing in the world and sometimes very, very good mothers put it right into baby bottles, to show love. Unconditional love.

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Hello Hotdog

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When the summer of 2011 spit me out, I was newly single and raw from heartbreak. Going through a break-up is awful, going through a break-up and being unemployed was not making it sexier, and being unemployed, going through a break up, and feeling like you can’t wake up and you can’t sleep, is the most uprooting, hopeless feeling I have had to date. That’s sort of how I felt- like a tree, uprooted, laying on a yard, with some green shoots on one side, but mostly ravaged by some unknown parasite.

Loss. That will do it. Loss will eat you, like you are a Mille-feuille– it crushes you in the middle, and picks out the parts it likes best, leaving just a slip of custard stained paper. I say this with the certainty that things could have been worse. My energy levels were so low at this point, and I only wanted to wear jogging pants (this symptom has never gone away). I went back to my doctor, tail tucked between my legs – where I always keep my tail so it doesn’t get caught in doors etc. I had read that lots of people with Hypothyroidism had success with desiccated thyroid, and while my Doctor was not familiar with it, she wrote me a prescription for some. I took it to the pharmacy and learned that she had not given me the right prescription but another synthetic thyroid medication. As is my way- impatient, annoyed, hungry at all times- I just wanted to start feeling better and filled the prescription.

I didn’t feel better right away, but gradually, I did. The worst side effect with this drug was the crying. I cried every day, for many weeks, mostly on the bus where crying is totally acceptable because buses are just a “can of misery”, or when I saw something particularly moving. I cried in the shower where it was most economical. I tried not to cry over perfectly good acts of kindness made less rewarding by a weirdo crying. Tears came out of nowhere. So these tears, on top of the other tears for all of the sadness for myself, really added up. I should have kept a bucket for tear collection so I could water that tree on the curb. It opened up a well of sensitivity that I can not close- so if you are telling me about you, or you are a beautiful bird, or tree (YOU CAN READ?) – then I may cry a bit, but in a cool, you can tell I am good at sex, kind of way.

The best effect of this drug was that it was working. I noticed key factors- one being exercise, and a lot of it, really impacted how well I felt. And if I missed a dose, I would feel it- if I missed two it would feel like I was starting over. Knowing what was a side effect of the drug and what was a reaction to my actual life circumstances of heartache, and the sheer panic of poverty looming while working my way through my last year of school, was a real “toughie”. And then something lifted in the ruins. And I came out of it. Not like a phoenix from the flame. More like a hot dog that rolled out of the fire into some cool sand. Yeah, like a hotdog.

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Thank you for Googling My Disease

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Hashimoto’s has a variety of causes, risk factors, and treatment can vary from person to person. I am not offering you medical advice. Please go to a doctor for medical advice. Me am no smarts. Me no know. Me like squirrel!

Typically, one is given thyroid hormone replacement drugs. My desired treatment, wearing mittens and sleeping all day, wasn’t available by prescription. Perhaps one day in the future, health care will catch up to the specific needs of the individual patient instead of thinking all of us want to return to the vibrant person they once were.

The idea of being on medication for the rest of my life scared me. I am drawn to a healthy lifestyle, I eat a pretty clean diet, unless you have chips, and then I eat chips. Your chips. I took them and I ate them. Or a DQ Peanut Buster Parfait- those are like medication for the soul. Until they hit your stomach, and then they are like diarrhea for your butt. Where was I? Right. Since this first pill was causing all of these side effects (hair falling out, heart palpitations, anxiety) I decided to go the natural route and with the supervision of my doctor, I went off my medication. Please note that at this point I did not realize this was an autoimmune disease, I thought my thyroid was just lazy and the right supplements or food may fix it. I mean, that is what google told me.  Google always right! Google all knowing.

I went to see a “natural practitioner” – I thought he was an ND, but I looked at his website today and he is a “Health Detective”. Well, that sounds official. So, in hindsight I should have done a little bit, just a tiny wee tiny little tiny just a smidge more research into this “practitioner” . I also wish I knew at that time that I had Hashimoto’s, because some of the treatments he gave me, especially Lugol’s Iodine, isn’t appropriate for someone with an autoimmune thyroid disease. Whoopsie daisy. It’s okay, it is just my gland, the one responsible for metabolism, and a variety of other incredibly important jobs, that is slowly dying, no bigguns. He also sold me this little thing, to plug into my iPod, I can’t remember the science behind it,  but I bought it as I felt really vulnerable and desperate. Look everybody, a Health Detective cured me with this thing I plug into my iPod. What? Yes. He made it himself and it is most likely magic. If you plug it into your iPod a message comes on saying “Hello Dummy”. Actually, it just makes poltergeist white noise sounds. Maybe it will work for you though, fifty dollars please.

There are plenty of  MD’s, ND’s and qualified people to help you. You can build a team. It isn’t worth the gamble to end up sicker, or disillusioned. In my case, at the end of the treatment or when I ended it – I felt worse. My thyroid was not working better, even though the energy measuring machine in his office insisted it was. And it was expensive.  I felt embarrassed and angry . Sure, I feel like that most days but at least I had someone to direct those feelings towards, instead of myself. That was a nice break. Maybe it wasn’t a terrible investment after all.

I also saw an herbalist who was convinced that my thyroid had been crushed in an injury to my neck. And that she had a chiropractor that could fix it. Possible, sure. But not the case. Another told me it started when I got pneumonia a few years ago, another suggested I resolve my issues with my mother. Another said that I needed to voice my opinions more. I am sure if you know me, that isn’t an issue. Give up gluten? I have been gluten-free for 8 years . I have stacks of books, an education in Holistic Nutrition, and I am still learning.

One thing that has changed a lot for me is how I listen to people. And try not to offer advice. Even though I may have some.  That impulse to find a solution or to help, can be misguided. A dear friend was recently diagnosed with a very painful autoimmune disease and when we were catching up she said “well, if I don’t die in the first two years, I have a really good chance at making it”.  So maybe, I wasn’t going to tell her about the article on fish oils, or curcumin, or whatever impulse I had to try and help. Or to make it somehow about me.  I was just going to sit with my friend in that moment. Because I don’t have advice for that. I have feeling for that. I have fear, and sadness. And hope. I have gentle hugs for that. It is okay not to know and we have to get comfortable in that place of unknowing . Just do your best to be right there in that moment. That is where you are needed.

Advice is often not support. I would say that cookies are support, but the relationship between foods that cause inflammation and autoimmune disease would suggest otherwise.  I know that often advice is often an expression of frustration and love.  But please, don’t google my condition and offer me advice.  I have googled it too.  Just laugh with me when I can’t tie my shoes, or let me put my cold hands up your shirt. I am going to be fine, even if I never figure it out.

 

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The Body is a Vessel for the Heart and for the Cookies.

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It took me a while to write about this. Afraid that people would find out that I couldn’t really do things I once did, at least not all of the time. Or even wanted to. Mostly concerned they’d see my insides, which are mostly soft with some angry bits and maybe made of red thread. Keep in mind until 2010, I didn’t even know what a thyroid was, I am not clear what is going on in there. Until pretty recently, I thought babies came from belly buttons. And I was right. Don’t let someone touch your belly button unless you can imagine them being the father or mother of your child one day.

The lyrics from Paul Simon’s Heart And Bones, “Why won’t you love me for who I am where I am”, is specifically the best part of that song and everyone is allowed to cry when it plays. I had love, no matter what was happening to my hair, or how altered I felt. I had kindness in my life. I had family and friends. This is health in it’s own way. I knew it. I know it. Despite tremendous change and feelings of loss, I had and have a lot.

Should I apply those thoughts on love to my own body, well, I guess I never really thought about that kind of love, the where I am who I am kind. I do now. I don’t worry as much about how I look in a bathing suit, or my jeans, or my bathing suit over my jeans. Which looks pretty cool. This new skill of accepting myself, shows up more and more. It is just a body, my body, doing it’s best, as genetics and environment roll through me, no better than any other. Just the one that I have. The vessel, where I store my snacks and where my heart is. Even when my shoes seem so far away, or I magically put on ten pounds in a week. I am fine. Sometimes, I understand more (not about biology). But, about other important things.

So, where was I? Hair loss. Okay, so imagine the most beautiful hair in the world- or like Scar from the Lion King but nicer, sexier.  My mother use to call my hair a “crowning glory”. So you can imagine the amount of ego I had wrapped up in this hairdo. That was now all over the bed, the kitchen, my computer. My meals. My boyfriend would sweetly sweep it up if he could before I noticed. The first pill that I tried, a very mild dose, had this side effect, nothing to worry about according to my doctor. She wasn’t aware it was a side effect (it is a side effect of this medication I was trying) until I told her. She recommended that I buy a better quality shampoo, perhaps “A Pantene”.  I remember thinking that I buy much fancier shampoo than my doctor. One of us had to get our priorities straight (her). Also, I began to worry that maybe this magic pill that works for millions of other people, wasn’t working for me. My heart began to beat really fast, and the room seemed to get smaller. Turns out, that was the medication too.

 

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One morning in 2010, I couldn’t tie my own shoes. To be fair, I couldn’t have tied anyone’s shoes that day. I was going to be late for work. So there I was, in my early thirties needing help tying my shoes. Already? My hips wouldn’t bend, my hamstrings were just stiff rods, my feet a million miles away. Pain, stiffness, insomnia followed by inability to fully wake up. Depression- a muddy, awful blur, and that foot on my chest each morning.  Well, I could live with that. But, I couldn’t tie my shoes, and that was really going to be a problem. Not that the other symptoms were not. I had no energy. Exhausted, I was cancelling stand up shows and avoiding my friends. My memory wasn’t great and I was forgetting people’s names, those of people I knew well.

Back to my shoe problem. Not ready for Velcro I went to see my doctor.  I told her my symptoms, and she asked if I had my thyroid tested. I had not. What is a thyroid? It must be a pretty big deal if it can turn me into a sad marionette. My results came back from my TSH blood test and I was borderline “hypothyroid”. I had many of the symptoms, some severe, but they were also symptoms of many other conditions, and I feel very lucky that my doctor tested my thyroid. The potential to be misdiagnosed, especially with depression, is very high. She sent me home with a prescription.

I had no idea what any of this meant, but I felt like I had an answer.  I took the medication. Everything was going to be great! I gently patted myself on my back. And then, a few weeks later, my hair started to fall out. In clumps.

This blog is about what the past four years have been like as I navigate (with humour and compassion on most days) my 2013 diagnosis of Hashimoto’s Disease, the reason why my hands are so cold, and why I want to lay down on your couch. Oh, and if you have something sweet, I’d like that too.

 

 

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